My husband had an amputation 9 months ago and all the scans so far were clear. His last scan showed several nodules (up to 4mm) that look like metastasis. Can someone recommend a drug that is effective with lung metastasis?Last year before the amputation he has a 3 cycles of chemo but it wasn't effective.
There is no miracle cure for metastatic synovial sarcoma but there are a bunch of options to look into.
What is his oncologist recommending?
For me, when nodules appear, my oncologist redoes a scan 3 months later to see if they grow and how fast they do. I've had many nodules growing since 2007 and they were all taken care of by surgery.
4mm sounds very small but it's only been 9 months since the amputation. That's a rather short time :-(
He should ask his doctor about a drug called tribecadin it’s in clinical trial but it’s been helping me for 10 monthes
Robert, do you mean trabectedin aka yondelis?
Trabectidin aka yondelis is a good option. In belgium its an approved treatment. And then on me they also tried gemictabine with dacarbazine and now i am having ifosfamide alone
I've had lung metastasis several times. I've dealt with it primarily through surgeries. I also had success for almost 20 months with Votrient, it reduced my tumors to the point where they were gone for almost a year before they began to reappear. I also tried a clinical trial. Be aggressive with your treatment. It is the only way of keeping it at bay.
Good luck!
Jim
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Thank you all much appreciated. We are trying to get trabectidin from Europe as in Australia this drug is not on the registar.
Yes I guess there is no rule about the timing of metastasis. It was such a devastating news as all the scans were clear so far and there were no issues after the amputation. We thought that with amputation we are trading his leg for his life... Its hard to stay positive.
Elodie Espesset said:
There is no miracle cure for metastatic synovial sarcoma but there are a bunch of options to look into.
What is his oncologist recommending?
For me, when nodules appear, my oncologist redoes a scan 3 months later to see if they grow and how fast they do. I've had many nodules growing since 2007 and they were all taken care of by surgery.
4mm sounds very small but it's only been 9 months since the amputation. That's a rather short time :-(
it is very hard to stay positive but being positive and fighting is what will preserve his life. Take refuse in knowing that the community is with you and will provide what information and support we can.
Have faith - Jim
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@Shane, I just read that your wife has had metastasis to her lungs. I am so sorry to hear that, my heart goes out to you. I figured I must tag you to this older thread where our members provided some great insight into what they had done in the same situation. You can also look into other posts that have described lung metastasis by clicking on this search link: https://forum.synovialsarcomasurvivors.org/search?q=lung
where you will find several other existing threads that may be of help. Also please do not hesitate to create your own post by clicking on the “+ New Topic” button under the “General Discussion” tab.
All the best @Shane, we are all rooting for you and your wife.
-Arjuna from ModSupport
Thank you Arjuna…
My husband has had no sign of anything for 2 years, but in January they did a scan and saw something very small and told us they believed it to be an infection or a blood vessel. They said they still saw it but it has not grown, but just yesterday they saw another one and said they want to keep doing his check ups every 3 months instead of 6 months out. Has anyone else had the same thing happen to them as well?
Hello. I have had the same situation. Had tumour on my foot and was amputated. For almost two years no issues at all. Then they found few spots on my lungs. Did chemo. They shrunk a little after three cycles and is now stable after 3 more cycles. I am 2 months post chemo now. Let me know if you have more questions. Thanks